Tori's mum Wendy Punch Savill said since her last appointment the 15-year-old's bones in her neck have grown to the point where they are now restricting her breathing.

"Just a few weeks ago we found out that Tori's airways are closing," she said.

"She just had a whole heap of x-rays, ultrasounds and blood tests and it's come back that it's due to the bones in Tori's neck, in her spine area, are actually four times the size of what they should be.

"Her airways are showing, in the tests she'd had done, to be the size of babies' airways.

"We've just been told at the moment to monitor her and if we notice any difference in her breathing to call an ambulance.

"Her airways are that narrow that they've told be to advice and ambulance not to try and put a breathing tube down her throat because her airways are too narrow.

For Tori, who undergoes regular tests, the bone growth in her neck has occurred since her last check up 12 months ago.

Later this month the family will travel to Brisbane where Tori will undergo a sleep study to monitor her breathing while she sleeps.

"She hasn't got the energy like she used to. She gets very puffed out and her breathing does deepen," Ms Punch Savill said.

"At the moment we've got her at home because I'm a bit concerned about sending her to school in case she gets knocked in the neck area, until we get down to Brisbane and we she what they are going to do.

But given how rare proteus is, Ms Punch Savill said even Tori's doctor wasn't entirely sure how to approach the latest symptoms, with fears operating may cause the bones to grow back twice as bad.

The diagnosis is "scary" for the family but a resilient Tori is not letting her condition get the better of her.

"She's got a high tolerance for pain so it's hard to tell when she's actually in pain," Ms Punch Savill said.

"She's usually a pretty happy kid and she's been loving school."

For now the family is desperately seeking help to buy a special bed for Tori to support her spine and neck, and a mat with an alert system to monitor her breathing while she sleeps.

The family has a GoFundMe page set up to cover the costs. Click here to help Tori.